Severe constant internal trembling/vi... - Restless Legs Syn...

Restless Legs Syndrome

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Severe constant internal trembling/vibration/tremor with severe weakness. Please help.

ejaji profile image
15 Replies

I am female, age 48. Please help me find out what could be the cause and solve this. For the last 2 months I have developed very severe constant internal trembling (like when very cold or very scared)/vibration/tremor (not visible externally) with severe weakness to the point that I am scared now of what's going to happen to me next. This has given me full blown anxiety as I m scared and fed up of it, and my heart also pounds in my chest sometimes (while sleeping usually). I am not able to function normally due to the trembling and weakness, and all my normal day's routine is stopped due to that. I am going to give my brief history here (some things which I feel may have contributed to this in some way) if it can help anyone in giving me a solution.

Before Nov 2019 - I was in perfect health.

Nov 2019 - Root canal was started on two adjacent molar teeth and the dentist used something called "pulp devitalizer" on my teeth without even asking me, after which I had pain in my gums and my left cheek and lips went numb for some time. (Nerve damage? I am just mentioning this in case it could be the cause.) Both RCT s were not successful. I had to go to 3 other dentists up til March 2020, then the lockdown started and my two RCTs were still left paining n incomplete till now. (So for the last 1 year there has been constant inflammation in my gums and the infection comes and goes). Moreover, this dental episode caused me a lot of trauma as I was suddenly now faced with losing two adjacent molars, whereas I had only gone to get their fillings replaced n the teeth had no pain prior.

March 2020- Had one episode of extremely heavy menstrual bleeding which went on for around 3 weeks (I though it was due to the above stress). Could not visit any doctor due to lockdown, but it stopped on its own.

May 2020- Was sanitizing so many things with my bare hands. Hence hands were soaked in concentrated solution of dettol for an hour sometimes, after which i felt a strange cold and tingling sensation for many weeks after that (cud it have absorbed inside n have caused systemic nerve damage?). Because I don't know if this is just a coincidence, but exactly two days after this, suddenly I started experiencing SEVERE AND HORRIBLE internal trembling/buzzing/internal vibrating feeling throughout the whole body (not visible outside, only felt inside). Along with this, severe RESTLESS LEG SYNDROME started.

June 2020- I read on healthunlocked about restless legs possibly being caused by low ferritin. Although I could not get a blood test during lockdown, but felt this could be a possibility due to my heavy period in March, so started taking iron everyday along with whatever other supplements I read about (like magnesium) . Restless legs was almost gone by October, but the internal trembling/vibration remained at a very minimal level (barely noticeable, only when still). I thought I was going to be okay now.

January 2021- Suddenly these vibrations resurfaced in a VERY SEVERE level. One day my Mom almost choked on some food (she was ok right after though). But I momentarily panicked and suddenly the very severe trembling/vibrations started alongside. Then after a few days, the fillings inside my teeth canals came out and canals got exposed and those 2 teeth suddenly started paining badly and the gums were also swollen. Suddenly the trembling/vibrations became unbearably severe and my BP also shot up to 170/110 during this episode. I didn't know what was going to happen next and I thought I was going to die and started phoning people to inform them of my condition. My period was also 3 weeks late.

February 2021 - Had no period this month. Severe vibrations and severe weakness continue and have become permanent, making it impossible for me to go about my daily things or go to the dentist and get my work completed.

I got a blood test done in Feb 2021. The iron profile was as follows:

Iron - 77.8 (normal range given 50-170)

TIBC - 426

Transferrin saturation - 18.26

Ferritin - 17

Haemoglobin- 13.6

My cortisol test was done at 8:45 am and was 20 (normal range given was 6-18).

I got all the thyroid tests and antibody tests done which were in mid range n normal. Other test like B12, Folate, blood sugar, liver, kidney etc were normal. Only protein n albumin were just on the borderline high on the liver test. Triglycerides were high but I don't think that is the cause of the vibrations.

Vit d was 31.56 (normal 30-100)

By the way, I also got hormones tested randomly (no day of cycle, as I didn't get my period this month). FSH 16.76, LH 6.08, Prolactin 22.12. Estradiol was not tested this time but was tested way back in Nov 2019 when it was 16. My last ultrasound of Nov 2019 was normal.

No period this month (March) either. I needed to get my teeth treated asap (cud they be the cause? ) so was thinking of finishing my dental work, but this whole dental experience was very traumatic for me and it's gotten so bad that I automatically feel severe anxiety just thinking about it.

Now the problem is that now the vibrations have become PERMANENT and never go away, no matter what supplements I try for them (iron, magnesium, valerian, etc.) . I have so many issues going on together right now - dental pain and trembling/weakness/heart pounding while waking up/constant anxiety/unable to speak and do things normally because I feel so ill/weak, unable to go out of the house because of the weakness/vibrations. I sent my reports to some doctors who felt everything was normal but maybe the trembling was due to menopause? But I don't have any hot flashes. Also I have never seen anyone in my extended family with such severe trembling n weakness due to menopause that they cant do anything.

Cud it be due to the ferritin? Doctors seem unconcerned about it. When I asked a doctor, he said that it doesn't matter and my haemoglobin is fine and I can even donate blood (!). Cud my ferritin be low because of my tooth infection (hepcidin) not allowing the iron to absorb? But I am not able to go to get the teeth completed/extracted because of my weakness/vibration. The dentist also said he will not be able to extract the teeth if I am so weak and told me to get better first. So I am in a catch-22 situation. I am taking both ferrous sulphate and iron bisglycinate with vit c but not getting any relief from the vibrations/weakness. Or will it take time? I could not find liquid ferrous sulphate. I wanted to try liposomal iron but don't know the correct dose (can anyone can guide me?). I want to avoid IV iron if possible.

I am also taking magnesium, ashwagandha, valerian, flaxseed, but nothing is working.

Please let me know what could be the cause and suggest other medicines/supplements/anything else to stop the trembling/vibrations and the weakness.

(Sorry for writing in short form (cud/shud) or any mistakes, but I don't have the energy to correct anything. I am posting this in the restless legs forum but please let me know if there is also any other forum to also post it in, so that I can connect with more people who may have knowledge about this.)

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ejaji
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15 Replies

So sorry to hear about your problems.

I can't say exactly 100% what your main symptoms are due to, but I have some thoughts you may find helpful.

You mention at one point that you had restless legs syndrome. Sorry to say since you don't say what symptoms you had that made you think you had RLS, I can't confirm that you have, or had RLS.

The main symptoms you have now do not seem to be RLS.

It does seem that in trying to make sense of what's going you're connecting several things together that really don't have any connection. This is natural enough, but isn't necessarily true, e.g. an infection may raise your ferritin, not lower it.

As regards RLS, if you tend to suffer primary RLS then it's quite possible that your iron levels may have made your symptoms worse at some point.

Looking at your blood tests. It does appear you don't have iron deficiency anaemia and everything looks normal.

However, even though your ferritin is "normal" i.e more than 12, your doctor doesn't appear to know that for somebody with RLS it ideally needs to be more than 200.

The rule is in this case.is if it is less than 75, taking an oral iron supplement may help.

I see you are taking supplements. Logically it would seem that the more iron you take the better it will work. This is not the case.

The important thing about iron is not how much you take, but how much you absorb. Taking a higher amount does not necessarily mean you absorb more.

A popular supplement for RLS is "gentle" iron, ferrous bisglycinate. Ferrous sulphate is not really tecommended.

To aid absorption

1) take it 30 mins before or 3 hours after eating.

2) take vitamin C at the same time or drink orange

3) do not take magnesium at the same time.

4) Only take iron every other day, NOT daily and only once that day.

Please excuse my next statement which you may find difficult to consider, but from your description of the events you've endured and your symptoms, I'd suggest you are suffering from acute anxiety state/generalised anxiety disorder.

It may be worth discussing that with your doctor.

ejaji profile image
ejaji in reply to

Thanks for your reply.

When I had severe RLS from around last May to October, I was having severe pain/spasms/unbearable sensations in my legs but only when they were still (like while trying to sleep) and I had to move my legs to get relief. I got some of the same symptoms in my arms too sometimes. Hence I could not sleep at all for weeks on end. It was unbearable. I took ferrous bysglycinate with vit c from July thanks to the advice on this forum and my RLS symptoms resolved by October. I don't have that severe RLS as of now, though I feel some kind of discomfort once in awhile. But when I had initially developed that severe RLS last May, at the same time I had gotten these very same exact severe vibrations. I also feel these vibrations more while still, so I was wondering whether, if my RLS resolved with iron, could these vibrations also (as they started at the same time)?

I use Solgar chelated iron. One tablet has 25 mg of iron bisglycinate. How many of these can I safely take at one time?

Yes, I have listed so many things just to ask if they could be the cause.

Although I don't know if low ferritin is the cause, but I do know that my iron, saturation, etc was much higher back in my previous lab report of nov 19 (when I had no such symptoms) although I never even used to take iron back then. But even after taking iron for 6 months last year, my iron levels in Feb 21 are much much less than they were in nov 19.

Yes, you are absolutely right about the anxiety. I realize that and have mentioned it above. This has developed mostly in the last 2 months due to my health suffering because of my present severe trembling/vibrations and debilitating weakness. Back in may 2020, I did not have this level of anxiety at all (even though I had gone through stress, but I had dealt with it and was functioning normally), but even without anxiety, the vibrations/trembling was present still (but not this debilitating weakness). I think if I can find a solution to the severe trembling/vibrations, the anxiety might lessen on its own. Meanwhile if you know of any natural supplements for anxiety, pls let me know.

in reply toejaji

Hi and thanks for the clarification.

I don't think I can suggest anything until it's clear what your current symptoms are due to.

As I wrote one possible explanation is anxiety and to some extent this does match the pattern of your experience. Anxiety can creep up on you insidiously and it's not always obvious.

I'm not at all sure that your current symptoms can be explained by RLS. In addition I'm not entirely sure that what you describe as RLS was actually RLS.

In any event just to clarify, low ferritin isn't a cause of RLS. People who do not have RLS can have a ferritin level as low as 17 (which is "normal") without getting RLS. A ferritin level below 75 is only a problem for people with RLS.

It's not clear. On the one hand when you did have what you thought was RLS and an iron supplement relieved the symptoms, that might suggest you did have RLS. However, as your ferritin is now 17 I would have expected the same symptoms to recur.

I should take TWO Solgar, every other day.

It's also probably not a good idea to assume that the RLS symptoms and your current symptoms are connected.

I wouldn't entirely dismiss anxiety, anxiety is not just emotional, i.e. feeling apprehensive it's also physiological and can have very physical consequences including tremors and palpitations.

A further thought, as you mention weakness is that you may be suffering fatigue. This could be chronic fatigue or could be due to some other condition.

I can't recall all the blood tests you've mentioned but, as your doc will know blood tests for liver function, thyroid function, renal function, diabetes and cortisol would help if not already done.

If they're all OK then you might have further screening.

2islandboy profile image
2islandboy in reply to

Manerva, your discussion about anxiety is spot on!

Ranjits profile image
Ranjits in reply toejaji

Hi last three weeks I got same problem severe anxiety my body is trembling starting as soon I come out of bed I being admitted to hospital I had all scans of head mri scan blood tests they can’t find any thing else I don’t know what to do trying everything yoga listening to videos but nothing is helping me .I don’t know who to to see next please if any body can help me . Trying to go for small walks if any thing find helpful please let me know

Joolsg profile image
Joolsg

I agree with Manerva.Out of interest what medications are you taking? Anti depressants and sedating anti histamines worsen RLS and dopamine agonists cause all over RLS if you are augmenting

ejaji profile image
ejaji in reply toJoolsg

I was never on any medications prior to the first time it happened in May 2020. Even afterwards I didn't take any medications but rather tried to first solve it through supplements like iron, b-complex, magnesium, etc. if possible. If you have any suggestions on what the solution could be, pls let me know.

Joolsg profile image
Joolsg in reply toejaji

I wish I knew the answers. There's no cure at the moment- just drugs for those with severe RLS. A lot of people manage to control symptoms with iron supplements/infusions, magnesium or diet but they don't help the majority.

DicCarlson profile image
DicCarlson

Well this appears to me to be a dental problem. There is plenty of contradictory information about root canal treatments. Here is just one explanation...

wellnessmama.com/139664/roo...

There is another class of dentistry labeled Holistic dentistry. Here is an article with a link to the Holistic Dentistry Association (USA).

"Many holistic dentists are against performing root canals. They believe that the use of chemicals in sterilizing agents, in addition to bacteria becoming trapped in the canal as a result of the procedure, can cause long-term health effects."

drweil.com/health-wellness/...

This is interesting to me because my RLS was also somewhat "sudden onset" (I believe from a head injury some 10 months prior). My severe RLS was controlled with iron - but I'm unsure of the mechanism that created the deficiency.

Reb0013 profile image
Reb0013 in reply toDicCarlson

I agree to the extent that I would not rule out a chronic low grade infection from the dentistry "adding" to the high anxiety already taking place. I would suggest also consulting with a gastroenterologists and test for possible yeast and/or other overgrowth of bacteria at this point. These type of possible infections could cause internal vibrations. I myself have experienced the sort of internal vibration she is describing but to a much lessor extent but it was during a stomach infection. Early mornings while laying in bed I could feel my stomach and gut "quivering" or vibrating like a small painless current causing it to "buzz". Fortunately, it went away after antibiotics.

It might be helpful for you to see someone who can look at all the various things going on for you and pinpoint what the actual cause is. In Australia we have general physicians (as distinct from general practitioners (GPs)) who deal with unusual or difficult to diagnose conditions. It requires a referral from one's GP to see a general physician. Perhaps you have something like that where you live?

Allyp69 profile image
Allyp69

So sorry to hear about all your health problems...sound absolutely awful. RLS is the least of your problems and you definitely need expert medical help. Persist and ask to be seen.

Nelxy profile image
Nelxy

You said your "Vit d was 31.56 (normal 30-100)" I think yours is bordering on deficient and you would benefit from Vitamin D3 supplements.

I was prescribed AdCal-D3 as mine was also very low. I have noticed that my inner trembling episodes have mostly stopped now.

Boxer215 profile image
Boxer215

Hi, I’m sorry you are going tho’ all of that. I;ve had RLS on & off but for the last 5 weeks I have muscles twitching & electrical buzzing mostly in my arms & heart banging. This all happens at night & today & feel wrung out mentally & physically. I’ve just had a blood test & all seems fine. I’m to see my French GP on Monday & think he will refer me to a Neurologist (which will take weeks). Terrified to go to bed expecting a night of electric jolts & buzzing,

Internalshaker profile image
Internalshaker in reply toBoxer215

It is weird how night time is the worst for the buzzing and twitching. I'm the exact same!!!! Nearly drives me batty. My legs ache really bad at night too. That seems to be worse for me since starting a keto diet which aim doing to lesson inflammation for hashimotos. Some suggest that cortisol levels out of whack contribute to the vibrations?!

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